Myalgic Encephalomyelitis (ME)

Unraveling the Fray

“ME/CFS” advocacy is fractured. I would prefer that was not so and that every advocate subscribed to the same advocacy philosophy of holding the government accountable.

For example, I strongly object to welcoming the CDC, with its atrocious “CFS” history and no genuine course change, to the fold. Until this day, the CFS Toolkit (touting GET and CBT) has not been recalled. Surely, this must be the lowest of bars. It shouldn’t be the only condition, but it seems like a “must have” condition for considering the possibility that the CDC has turned over a new leaf, let alone for promoting any CDC efforts. It makes my toes curl to see the intramural NIH study cheered on even though one of NIH’s ME somaticizers Dr. Brian Walitt is in charge of it. But what concerns me the most is SEID, the new definition for CFS and ME by the IOM (now called the National Academy of Medicine). The IOM delivered a criteria that captures a more heterogeneous patient group than the CDC’s Fukuda definition, with complex harmful consequences.

These and other positions are held by many seasoned and accomplished advocates who have been in the trenches for a long time, many for decades. They may not talk about it, but typically they have paid the price of becoming much sicker, severe even, for their advocacy efforts.

Reminiscent of Larry Kramer, their warnings and objections are not always popular with advocacy newcomers who dangerously haven’t familiarized themselves with ME history and policy implications and whose enthusiasm has them convinced that quick results are just around the corner, now that they have entered the arena. They skip right by finding out what has been tried in the past, what has worked and what hasn’t, what government tactics and strategies have been used etc. Hope is a hard commodity to come by as an ME patient. That coupled with a novice’s passion makes it easy to dismiss the warnings of those who have seen it all before.

Even though many of the veterans have considerable expertise to offer, even advanced degrees, none of them have ever gotten paid by fellow patients nor would they consider pursuing salaries or reimbursements of personal luxury items from impoverished patients. The past contributions of these longtime advocates have largely been erased. Their current efforts are either hijacked or misconstrued because genuinely understanding them requires to look past the shiny objects the government has strewn along our path. It doesn’t help that the veterans’ policy positions, despite being exceptionally well considered and based on extensive experience and analysis, are typically not covered by the media. This is largely due to the fact that all they have is their frail ME bodies whereas the other camp has a substantial and well-organized fundraising machinery and advocacy platform allowing for healthy paid employees to promote its agenda. The playing field is anything but level.

So yes, it would be easier if the ME community presented a united front. But easier means neither desirable nor healthy. What is not only unhealthy but wholly toxic and unsafe, is to label the criticizing of a position a personal attack on those holding the position. There is a difference between ad hominem attacks and valid criticism of an advocacy approach, especially when the advocacy approach is pursued by influential figures or advocacy organizations. Falsely ascribing the former to the latter is an unacceptable and disgraceful attempt to quiet dissent, to silence dissidents by shaming them. Nobody’s positions or actions are beyond reproach, especially not those of advocates in influential roles. Seeing the victim card played routinely by and for those in such influential positions has thoroughly worn thin. Emotional manipulation at the expense of other patients has no place in a disabled community. Many of us have put everything on the line. We are all sick. We all have relapses and other crises. Not everybody may live tweet or otherwise mention them, but that shouldn’t tilt the playing field even further.

What has happened to advocacy in ME? It seems that the old “inside voices” campaign of the CFIDS Association of America (now called the Solve ME/CFS Initiative) has been rebooted. Ironically, that triggers a mob mentality at every hint of disagreement with well-funded organizations or well-connected individuals with unfettered access to a large platform. This is distressing, especially so because it eerily resembles an HHS action plan from a few years ago to silence critics. This reflexive shaming of independent advocates and the organization MEadvocacy for even the slightest challenge of various initiatives, no matter how ill-advised the initiatives are, must stop. We have reached a point where even calling out the CDC or NIH for their lethal wrongdoing is being berated and dismissed without an earnest consideration of the facts, complexities and probable harms. This is madness. A worldwide advocacy monopoly that shuts down any dissenting voices only serves the government’s agenda. This community desperately needs all of its voices instead of a “smallest common denominator” approach. The latter has led to a considerable easing up on the government in the last few years.

Among the many advocacy battlefields, most of the seasoned independent advocates consider the definition and the name to be the critical issues that will determine the fate of ME patients. Those two issues have a long and complex history. The way I see them discussed is often treacherously simplistic, employing facile arguments. One cannot wing getting involved in these intricate discussions without risking considerable harm to the community. Instead, it requires doing the laborious homework. If we don’t insist on the proper definition (International Consensus Criteria – as developed and recognized by our ME experts) and the proper name (Myalgic Encephalomyelitis, recognized by the WHO), we will enable the government to condemn ME patients to eternal suffering.